Erythromelalgia vs Ray Peat's Diet

[lukashenko]

Hello everyone! Apparently I (23yo, Male) happen to suffer from erythromelalgia, a rare disease that consists on flare ups that include severe itching and swelling every time my body temperature increases (be it a hot shower, entering a warmer room, making exercise, etc.) I had barely noticeable symptoms 4 years ago but it steadily escalated a bit every year to the point really I reached today where I can't even go for a walk without suffering and needing to stop. This illness, at least for me, seems to turn on the highest during colder months (here in Argentina, my flares seem to start on the last week of April).

Surprisingly enough, the treatments I found on Living With Erythromelalgia seem to include some staples of my peaty diet:
- Antihistamines (not doing anything for me but making me groggy)
- Aspirine

But one of the most promising diet change proposales is the one commented by "Cindy2" on this thread: Diet changes and how it affects flares. She basically has shown promising results doing a low oxalate diets. That is, avoiding among other foods:
- Oranges
- Tangerines
- Dates
- Cocoa

This low oxalate diet of course implies going against what are peaty-friendly foods. I wanted to know your thoughts on it.

Disclaimer: I know there's no such thing as a peaty diet, since Ray himself said on an interview with Danny Roddy that his recommendations are tied to each individual's particular situation. But many high oxalate foods seem to be a universal recommendation of him.

 

[Forsythia]

where I can't even go for a walk without suffering and needing to stop.

I lived with this condition for many years. I called it "full body burning hot syndrome". Every doctor would call it something different based on their own bias and specialty. For instance, the symptoms in my upper body were diagnosed as "rosacea", but the symptoms in my lower body seemed exactly the same, but apparently you can't have rosacea in the lower body. With erythromelalgia, apparently you can't have symptoms in your upper body only your lower body. This was many years ago, and medical opinion may have changed since then.

I came to understand that I needed to look at every area individually as there seemed to be many things going wrong in my body simultaneously and each symptom may be caused by different things, even though the pain seemed the same.

For my feet, I finally figured it out. Every day on my commute to work, I would have to walk about 15 minutes from the train station to the office. I would have to stop half way and sit down and take off my shoes and socks because my feet would be so burning hot and painful. It was when I developed a new symptom, "electrical buzzing" in my feet, my research led me to believe I was suffering from a B12 deficiency. Not 1 of the many doctors I had gone to had checked my B12 levels.

I began taking Methylcobalamin B12 sublingually every day and slowly all the burning and pain in my feet ended. It also ended the same symptoms in my hands. Unfortunately, it did not end the same symptoms in my face.

I also learned the importance of keeping Vitamin D at an optimal level and that has helped reduce the symptoms in my face.

Years have now gone by. Every once in a while I start to get symptoms in my hands and feet again. It starts with just a little heat and burning. I immediately increase my B12 until the symptoms cease.

Have you had your B12 and Vitamin D levels tested?

 

[lukashenko]

I lived with this condition for many years. I called it "full body burning hot syndrome". Every doctor would call it something different based on their own bias and specialty. For instance, the symptoms in my upper body were diagnosed as "rosacea", but the symptoms in my lower body seemed exactly the same, but apparently you can't have rosacea in the lower body. With erythromelalgia, apparently you can't have symptoms in your upper body only your lower body. This was many years ago, and medical opinion may have changed since then.

I came to understand that I needed to look at every area individually as there seemed to be many things going wrong in my body simultaneously and each symptom may be caused by different things, even though the pain seemed the same.

For my feet, I finally figured it out. Every day on my commute to work, I would have to walk about 15 minutes from the train station to the office. I would have to stop half way and sit down and take off my shoes and socks because my feet would be so burning hot and painful. It was when I developed a new symptom, "electrical buzzing" in my feet, my research led me to believe I was suffering from a B12 deficiency. Not 1 of the many doctors I had gone to had checked my B12 levels.

I began taking Methylcobalamin B12 sublingually every day and slowly all the burning and pain in my feet ended. It also ended the same symptoms in my hands. Unfortunately, it did not end the same symptoms in my face.

I also learned the importance of keeping Vitamin D at an optimal level and that has helped reduce the symptoms in my face.

Years have now gone by. Every once in a while I start to get symptoms in my hands and feet again. It starts with just a little heat and burning. I immediately increase my B12 until the symptoms cease.

Have you had your B12 and Vitamin D levels tested

First of all, thanks f,or your response. This comment of yours is the first truly succesful case. I encourage you to share it here: livingwitherythromelalgia.org.

I did got tested on D (I'm defficient), not on B12, though I should't be defficient since I'm eating liver, milk, eggs and oysters weekly (though I could not be absorbing it somehow).

I'm working on my vitamin D defficiency (I work as a remote software developer and I intend to move somewhere I can get daily sun exposure)

 

[Forsythia]

I did got tested on D (I'm defficient), not on B12, though I should't be defficient since I'm eating liver, milk, eggs and oysters weekly (though I could not be absorbing it somehow).

It is a common misunderstanding about B12 that if you are eating animal products you can't be deficient. Absolutely not true. You are right about not absorbing B12. It's all about whether or not your body can make what is known as "intrinsic factor" in your stomach. Without intrinsic factor, it doesn't matter what you eat, you will be B12 deficient.

B12 deficiency is nothing to fool around with. Please don't get trapped in the diagnosis the doctor has given you. You may or may not have erythromelalgia. But it doesn't matter what the name of the condition is, you just want to get well. You cannot trust any doctor to get you well, you can only trust yourself.

This is a video with a powerful message. A doctor became completely disabled for years and eventually it was found all of his symptoms were due to a B12 deficiency. Even doctors get misdiagnosed!


View: https://www.youtube.com/watch?v=QqjyAeOLyKM

 

[lukashenko]

It is a common misunderstanding about B12 that if you are eating animal products you can't be deficient. Absolutely not true. You are right about not absorbing B12. It's all about whether or not your body can make what is known as "intrinsic factor" in your stomach. Without intrinsic factor, it doesn't matter what you eat, you will be B12 deficient.

B12 deficiency is nothing to fool around with. Please don't get trapped in the diagnosis the doctor has given you. You may or may not have erythromelalgia. But it doesn't matter what the name of the condition is, you just want to get well. You cannot trust any doctor to get you well, you can only trust yourself.

This is a video with a powerful message. A doctor became completely disabled for years and eventually it was found all of his symptoms were due to a B12 deficiency. Even doctors get misdiagnosed!


View: https://www.youtube.com/watch?v=QqjyAeOLyKM

Thank you really much. I'll go ahead and try to gain insights in why may I not be absorbing b12 properly. In the meanwhile I'll try to supplement to see if I respond properly to supplements. Otherwise I'll try to go into the rabbit hole of gut healing.

 

[lukashenko]

It is a common misunderstanding about B12 that if you are eating animal products you can't be deficient. Absolutely not true. You are right about not absorbing B12. It's all about whether or not your body can make what is known as "intrinsic factor" in your stomach. Without intrinsic factor, it doesn't matter what you eat, you will be B12 deficient.

B12 deficiency is nothing to fool around with. Please don't get trapped in the diagnosis the doctor has given you. You may or may not have erythromelalgia. But it doesn't matter what the name of the condition is, you just want to get well. You cannot trust any doctor to get you well, you can only trust yourself.

This is a video with a powerful message. A doctor became completely disabled for years and eventually it was found all of his symptoms were due to a B12 deficiency. Even doctors get misdiagnosed!


View: https://www.youtube.com/watch?v=QqjyAeOLyKM

Little UPDATE: I recently got tested on B12 and unfortunately it seems I'm not defficient at all. My test got 740 pg/mL, that falls inside the upper healthy range (according to the lab) of 210-910, so I guess not only do I have enough B12 in my blood but also intrinsic factor, since otherwise it would not get inside my bloodstream. Since the symptoms are so similiar to yours, maybe somehow the B12 is not getting to the cells, and thats what I'm looking at next. Nevertheless, I will go ahead and have some methylcobalamine supplementation and see how I respond, if everything fails I'll go ahead to square 1 and restart my research as you did.

 

[Forsythia]

Little UPDATE: I recently got tested on B12 and unfortunately it seems I'm not defficient at all. My test got 740 pg/mL, that falls inside the upper healthy range (according to the lab) of 210-910, so I guess not only do I have enough B12 in my blood but also intrinsic factor, since otherwise it would not get inside my bloodstream. Since the symptoms are so similiar to yours, maybe somehow the B12 is not getting to the cells, and thats what I'm looking at next. Nevertheless, I will go ahead and have some methylcobalamine supplementation and see how I respond, if everything fails I'll go ahead to square 1 and restart my research as you did.

You are very smart to understand that even though a test says you aren't deficient, you might still benefit from supplementation. There are studies that show people improve on B12 supplementation even though tests show their levels are not low. So, try the B12 for 3 months and re-assess.

Have you seen any change in your symptoms from D3 supplementation?

 

[lukashenko]

You are very smart to understand that even though a test says you aren't deficient, you might still benefit from supplementation. There are studies that show people improve on B12 supplementation even though tests show their levels are not low. So, try the B12 for 3 months and re-assess.

Have you seen any change in your symptoms from D3 supplementation?

I received yesterday my D3 pills so I couldn't really tell. Nevertheless, I'm moving to a less-urban place in a few weeks to make sure I get my D3 from sun exposure, since I've read on this forum that's not recommended to supplement with pills. Also I'm getting sublingual B12 (maybe I'm wrong, but it seems it should go more directly to the bloodstream that way).

In the meanwhile, hot showers keep my symptoms barely noticeable for hours.

I'll try to keep this thread updated since it may be the only useful resource out there for those trying to fix this crappy condition. Every bloodtest of mine falls in healthy range, and I've seen allergists, rheumatologists and dermatologists, all of them of course clueless. Just to remark how important it is to take health on your on hands

 

[Forsythia]

since I've read on this forum that's not recommended to supplement with pills.

Dr. Peat recommends D3 supplementation. I take D3 everyday. Many people on this forum take D3. If you can get optimal levels from the sun, that's great, but many of us need to supplement, especially in the winter.